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Chronic Subjective Dizziness

I have been reading up on this diagnosis lately. I realise a few people on this board that were diagnosed with CSD, ichbindarren and longshort.

The interesting thing for me is that their symptoms are very similar to my own, non rotary vertigo, feelings of imbalance / disequilibrium and fear of falling over.

I understand CSD is a contentious diagnosis and one that is not widely accepted, but my thoughts are this. If prescribing an SSRI like celexa benefits people who have this diagnosis then does it really matter what its called?

Whether I suffer with VM or CSD, i don’t care what its called, as long as I can find something to help treat the symptoms.

I will discuss the possible use of an SSRI with Dr S next month. I have now tried 3 migraine meds… sodium valproate / sibelium and lyrica without any respite.

For any other people diagnosed with CSD I would be interested to hear your story :slight_smile:

U have tried 2 anti convulsants and 1 calcium channel blocker. It only makes sense now for u to try an anti depressant. Good luck

I was tentatively diagnosed with CSD. I posted my story a while back, my symptoms are very similar to yours. I was told not to do anything for 6 months then either try CBT or a SSRI, I started with the CBT last summer as my symptoms were very low level but still there to remind me daily. I have found it very hard to accept this diagnosis as I feel it is more than psychosomatic how could my brain keep this going on for months at a time.

The CBT was very interesting however I don’t feel it has lessened my symptoms, whilst halfway through the programme I slowly developed some issues with insomnia mainly waking up in the early hours like a startled rabbit, I have recently suffered a bereavement and these chronic symptoms and not knowing what is wrong is taking it’s toll on me. Anyway post CBT I was put on a SSRI to help with the insomnia as soon as I went to 20 mg I started experiencing numb lips and tongue , shaking and sweating so they were stopped. My issues with insomnia still persist and of course some low grade motion so now I have started Ami so far so good. I will go back to see my consultant in the early summer as my caloric test showed bilateral decreased function although I did not get a satisfactory explanation for this abnormal test result. I know how frustrating this is it is horrible not having a definitive diagnosis but I do believe anxiety amplifies the symptoms so I have started to meditate and hope to start excersise gradually . I am taking mg and omega 3 daily , no caffeine to help sort out my sleeping pattern. I think if you can tolerate a SSRI why not as it is used for both migraine and CSD. Take care. C

thanks for your replies.

@Claire: I also dont believe that something psychological could on its own cause these horrible symptoms but I do think something psychological e.g. stress or anxiety could trigger migraine, which then triggers these sensations.

Its all rather confusing!

Sometimes SSRI’s can make migraine worse. In Heal Your Headache, Buchholz says that SSRI’s like Prozac should be substituted for one of the tricyclics like Nortriptyline or Amitriptyline. Just something to bear in mind. Also, I know of someone who tried Prozac for the anxiety that comes with this and they said it was horrendous and had to come off it asap!

This from Ruckenstein’s 2011 discussion on dizziness (he and Staab – when Staab was still at U of P [now at Mayo] – first advanced the concept in around 2005).

Vague sensation of light-headedness, subjective sensations of imbalance. These complaints, which can be characterized by their imprecision, are consistently among the most common that clinicians encounter when evaluating dizziness. Eliciting a history from these patients can be frustrating; often, they cannot describe their symptoms precisely. Rather than feeling frustrated, one can feel encouraged because the nonspecific, non-physical nature of the complaints leads to a specific diagnosis. Formerly referred to as “psychogenic dizziness,” persistent nonspecific dizziness that cannot be explained by active medical conditions is now a defined clinical entity known as chronic subjective dizziness, or CSD.3,4 Barber has noted that this diagnosis is suggested during the first 5 to 10 minutes of the office visit if the patient has no specific physical complaints.5

Diagnostic criteria for CSD include greater than 3 months of sensations such as nonvertiginous dizziness, lightheadedness, heavy-headedness or subjective imbalance present on most days, as well as greater than 3 months of chronic hypersensitivity to one’s own motion or the movement of objects in the environment.3,4 Complex visual stimuli, such as walking in grocery stores or shopping malls, or using a computer, characteristically exacerbate the symptoms. The physical examination is usually normal in these patients, except that hyperventilation typically reproduces their symptoms.

CSD most commonly represents a chronic anxiety disorder with or without associated panic and/or phobic disorders. Although the patient’s history may strongly suggest CSD, a full neurotologic history taking and physical examination must be performed, and selective tests, such as videonystagmography (VNG) and MRI, also are frequently ordered. This is done to reassure the clinician and—perhaps even more important—the patient that no organic disease is present.

Treatment of these patients incorporates typical strategies used to manage anxiety disorders. Slowly increasing doses of selective serotonin reuptake inhibitors are the mainstay of treatment, often coupled with psychotherapeutic approaches such as cognitive behavioral therapy.

Not sure I see why this is harder to accept than the notion that there is something “off” in our perception of things that results in the feeling of imbalace (the notion of proprioceptive inputs being the issue)? I think it all falls back to the stigma of “mental” issues as opposed to “physical” issues. Most of us will readily admit to anxiety, yet most of us are also quick to say, “of course I am anxious – I feel dizzy all the time.” It is highly possible, at least in my case, that I don’t know which came first – the chicken or the egg. Richy, I agree with your initial comment – I don’t really care if it is migranous in origin, mal de debarquement, chronic subjective dizziness, cervicogenic in nature or the result of withdrawing from a benzodiazepene (all of these are potentially applicable in my case). All I really care about is a way to fix the problem, and my suspicion is (and always has been once I educated myself) that there is significant overlap in these various areas such that a lot of the pharmacological treatments hit the same spot so that whatever your particular specialist focuses on will be his or her diagnosis and, if the treatment works, that’s what you have. There is no definitive etiological cause but the label sticks. For some, where the history supports one versus the other, it is likely to lean in that direction, but it is far from definitive.

Bottom line – I would try all the possible treatments to see if one works for you, regardless of what it is called.

Andy

1 Like

I think that CSD and MAV are the same thing, the only difference is the specialty of the practitioner.

For example, a psychiatrist is not interested nor concerned with the migraine component because it is not in their scope of practice. But they will focus on the anxiety component that is found in nearly every dizzy patient. A neurologist is not concerned with the anxiety component, so they will focus on the presence of any migraine symptoms.

Most of the SSRI’s or SNRI’s that help MAV patients effect both serotonin and noradrenaline. They may have a similar action to nortriptyline, a very common and migraine preventative. Thats my theory for why they work.

I think that’s a little further on the “black and white” scale than I would go, but I generally understand where you are and agree.

I would say there is a spectrum and at one end are people that are clearly migrainous (history of migraine, motion sickness as kids, nausea and light sensitivity, the full monty) and at the other end there are people who are clearly anxious but have never had any sign of migraine and no history, etc. It would be logical to call the first a case of MAV (or VN as we now call it) and the second a case of CSD. However, for the vast number of people that fall somewhere in the middle on that spectrum, I don’t think the nomenclature is of significance.

Andy

Apace, you really do speak so much sense!

From what I understand proprioceptive and somatosensory balance systems are used when we are standing still or walking slowly, however when we run or are in motion our eyes and ears take over.

Not sure if that statement is correct? However it would certainly insinuate that our proprioceptive and somatosensory systems are off when we have the symptoms as described by Staab?

— Begin quote from ____

Apace, you really do speak so much sense!

— End quote

That’s what I’ve been telling people for years, Richy! It’s taken me all this time to find someone who agrees! Can I enlist you to speak to my wife for me? :lol:

Yes, I think your point is well taken at least in my case. I’ve never had an issue running but only when walking or, at times, sitting. Your comment elaborates nicely on what I think of as the spectrum and those concepts are factors impacting on you depending on where you are.

Andy

— Begin quote from "apace41"

— Begin quote from ____

Apace, you really do speak so much sense!

— End quote

That’s what I’ve been telling people for years, Richy! It’s taken me all this time to find someone who agrees! Can I enlist you to speak to my wife for me? :lol:

Yes, I think your point is well taken at least in my case. I’ve never had an issue running but only when walking or, at times, sitting. Your comment elaborates nicely on what I think of as the spectrum and those concepts are factors impacting on you depending on where you are.

Andy

— End quote

Andy, we all know the wife knows best!

Has any type of medication helped you?

Richy,

I’ve had varying symptoms and have had diagnoses of migraine caused disequilibrium (I like this better than either MAV or VN :slight_smile: ), mal de debarquement (I had an event in 1986 that precipitated my first dizziness), anxiety and panic related dizziness, and I have such tremendous tightness, tension, pain, etc. in the neck, it’s hard to think that is unrelated. At the same time, I am in the process of withdrawing from Klonopin after more than 10 years of use (but this latest round of disquilibrium started before I decided to withdraw – my withdrawal was in part on the theory that I might have developed tolerance).

I have also been a cluster headache sufferer for much of my adult life (starting pretty much right after graduate school).

With that as a background, I have been on Verapamil 240mg/2x daily for the cluster headaches. It has worked beautifully for that and I have not had an attack since beginning that therapy (I’m whispering since I don’t want to jinx that).

I have been on Sertraline (Zoloft) for about 10 years – 50mg for most of the time, increased to 100mg in the past 3 months in an effort to knock out this latest round.

I have been, as I said, on the Klonopin for most of the time at .375 per day, increased to .5 per day in June of last year when this hit me again. I figured I’d try an increase and see if that stopped the problem and when it didn’t I thought, “perhaps this IS the problem.” Very confusing. So, now I’m trying to get off that drug and then I think I will try to get off the Sertraline. Will stay on Verapamil because if you have ever had or known anyone who had a cluster headache, I’d prefer being on meds and any risk that creates to the pain of cluster headaches.

If I find I’m doing well along the way, I will need to decide whether to continue tapering the meds or not. Probably will with the intention of reinstating if needed.

The one drug I’ve been interested in trying, depending on where I get, is Effexor as it seems to be indicated (by Hain at least) for all of the conditions I may potentially have.

Longer answer than you wanted, I’m sure, but…

Andy

1 Like

— Begin quote from "RichyF"

Apace, you really do speak so much sense!

From what I understand proprioceptive and somatosensory balance systems are used when we are standing still or walking slowly, however when we run or are in motion our eyes and ears take over.

Not sure if that statement is correct? However it would certainly insinuate that our proprioceptive and somatosensory systems are off when we have the symptoms as described by Staab?

— End quote

Hi Richy,
I’m not so sure about that. I know I’ve posted this before and it’s fairly hard to read and digest, but this caught my eye:

— Begin quote from ____

A chance observation of a dog with acute left unilateral vestibular failure, however, showed us that running is safer [1]. After awakening one day, the dog suddenly showed a severe postural imbalance and repeatedly fell to the left. When she stood still, head movements caused the falls. When walking slowly, she veered to the left, staggered about in counterclockwise circles and repeatedly fell. Surprisingly, once the dog was outside and began to trot, she was suddenly able to move without deviating from her course, and obviously felt better and more confident as her raised, wagging tail indicated. However, as soon as she stopped trotting and began to walk slowly she again showed the severe tendency to deviate from her intended path and fell to the left.

— End quote

— Begin quote from ____

A functional interpretation of the observation that you’re better off running than walking with acute vestibulopathy would argue that an automatic spinal programme of locomotion triggers the inhibition of descending vestibular sensory inflow. This explanation would agree with the recently proposed concept of sensory down- and up-channelling for multisensory postural control. According to this theory, the vestibular organ is the body’s sensor of position, i.e. it receives the ‘body-in-space’ signals (down-channelling), and the somatosensory system measures the joint angles, i.e. it receives the ‘support-in-space-tilt’ signals (up-channelling) [8]. In our examples, the ascending rather than the descending signals would define the desired value for the joints to control posture. A misleading vestibular signal could thus be suppressed via down- and up-channelling.

— End quote

journals.lww.com/co-neurology/Fu … ing.2.aspx

It seems that misleading vestibular input via the ears may be overridden by the somatosensory system, when we move beyond walking…?

I for one can feel much worse when moving slowly or standing still…but yet I can play football just fine (mostly)!

Regards,
Tony.

Hi Tony,

So it seems i’ve got it the wrong way around? The somatosensory system takes over once we are in motion?

I guess thats more in line with the fact that MAV is messing up our vestibular apparatus within the brain / ears / eyes etc

Hi Richy,
I believe so, yes - that link came from the ever-helpful Tom @ DizzyTimes, in response to a question I asked him along the lines of “how can I feel lousy/dizzy 24/7, but still play football?”! He said: “this should help explain it”, and sent me that link.

If I understand it all correctly (and I may not!), once in motion our dodgy vestibular input has the potential to be overridden by the information being passed up our kinetic-chain, from feet to head. For instance, when playing sports, it’s not necessarily as important for our brains to understand where exactly we are in 3D space (roll, pitch, and yaw), as it is to control where our limbs are in relation to each other, so we can adjust body position to make contact with a moving ball, for example.

Whatever the theory, I used to consistently feel better playing football - I couldn’t feel the rocking/dizziness once I was on the move and watching/chasing the football!
Tony.

That would also explain how I can run and feel ok. I wonder about skiing, I haven’t dared yet but might give it a go in the next weeks!

Wow - skiing’s an interesting one - different because you aren’t actually moving (as in running with your feet making contact with the ground)! And yet, the kinetic chain is really important here - interesting…! i wonder how many MAVVers have actually been skiing whislt dizzy?! You could be our ‘experiment’! :wink:

haha… lets see…

depends how well i can control the anxiety i am currently suffering with… its horrendous! I feel like i’ve hit a stage of chronic anxiety

Sorry to hear that - I really know how that feels!
Have you tried any Claire Weekes books…?

i’ve got one on order actually, waiting delivery.

I can normally cope ok, however recently the visual stuff has gotten a lot worse. Objects moving in my vision. I don’t know whether is the lyrica or not.

I really want to try nori or ami now and see how they help me